Deciding on treatment- 2nd opinion tomorrow- Onco score 25

tmb173

Hello,

Had surgery in early April to remove tumor.  I am 34 years old, early stage II, 2.1 cm, invasive tumor, no node involvement, clean margins, poorly differentiated, HER negative, ER and PR receptive.  Oncotype score came back 25 with a 16% recurrance rate. 

Trying to decide on whether or not to do chemo.  Tomorrow I should get the % that chemo would help, but based on my reading I'm guessing about 3%.  Did anyone else have this score?

whitbyjet

Hi- I did. I was diagnosed about 4 years ago. I was stage 2a, no node involvement with a slightly bigger tumor. My oncotype score was 25-the grey area. I decided not to do chemo. Had a lumpectomy and six weeks of radiation. It's a very personal decision, but I'm happy with the choice I made. Good Luck!

tmb173

Thank you so much for the feedback!

Anonymous

It's interesting how much treatment has changed.  Before oncotype, anything over 1cm ,chemo was standard.  When I went through it 2 years ago..my MO mentioned something about anything over 2cm.  He also was on the fence before the oncotype test because I was so "young" at 43.

In my opinion, the reality is that there are statistics, there are "standard guidelines", and there is your "gut feeling".  And when it is all said and done...it's all a friggin' crap shoot.  It's not that the oncotype is the golden rule, but it can be helpful if you are on the fence.  Unless it comes back "on the fence" like your case.  

I'm assuming you are not wanting to do chemo since you are asking this question and getting a second opinion.  And I'm assuming you are going to follow through with Tamoxifen?  I would list out the pro/cons with your MO's.  Many people here can attest that chemo is "doable", but it is not w/out side effects that could possibly effect you the rest of your life.  Would chemo prevent a recurrence?  Maybe, maybe not?  No one can say for sure.  That's the crap shoot of it all.

It's not a fun decision to have to be making , and I wish you peace with whatever you decide. 

tmb173

I have had many of those same thoughts these last weeks.

Who's to say that the staging criterea won't change in a few years based on new studies and all of a suddenly 2.1cm is Stage I as opposed to Stage IIa.  The tumor wouldn't have chaged but the parameters do.  And really- I'm pushed over because of .1??

That's another reason I wanted a second opinion.  What I really want is someone who is capable of looking beyond the raw numbers and forming a composite opinion.  I don't think I am anymore skiddish about chemo than your average person, but it is a toxic posion that you are introducing to your system and that's not something I take lightly.  But once I make my decision I don't want to look back- that will be very important!

Anonymous

I felt very similiar in making my decision.  I would hear chemo thrown around like I would just be taking cough medicine.  I wanted to think long and hard about it.  (Though, on the other hand, I didn't bat an eye at getting a BMX when I could have just done lumpectomy/radiation ~ that was more a gut feeling for me).

We all know that people are being over treated.  We just don't know for sure which ones.  Going through all of this, it still amazes me how much they don't know.  How much of the decisions are left to the patient.  I like that we have a choice...but also don't like that we have a choice ~ you know what I mean!

If you like researching/reading about this kind of stuff.. read "Bathsheba's breast:Women, Cancer & History" by James S. Olson.  Very interesting.  Makes you realize how far we have come, but at the same time, how really far we still need to go.

Pessa

My onco score was 28.  I had a BMX and chemo.  I wanted to do everything possible to prevent a recurrance or a metastasis because I didn't want to go through all this again.  In addition, my mass was not seen on mammogram, done one month before I found the lump, so I certainly could not rely on mammograms to find a recurrance or new tumor (thus the BMX).  In terms of the chemo, I was willing to risk side effects to try to prevent a metastasis, such as to the bone, which cannot be cured, only contained.  Chemo was quite doable and I have no lasting side effects (of which I am aware).  Finished chemo 2 1/2 years ago.

cookiegal

hmmm..I was a 22 with a positive node and did not do chemo....it was a tough decision, I really went back and forth for a long time.

Personally at 25, I might have done it, if you look at the chart, you can see some benefit at 25.

BUT, it really really is a crapshoot. If your gut tells you no chemo, it's ok. We're adults. You have to be willing to live with the higher risk, but remember chemo will drop you from a 16% to probably something like 11 to 13 percent.

Are you a gambler? Are you someone who seems to get side effects from stuff? What is your tolerence for being a medical patient? If you have neuropathy or chemo brain will you regret your choice? What will the impact be on your careerr?

I feel like when you are in the grey zone, all of this counts. Heck flip a coin and see if you like the result.

Also CMF is a really popular option when you are on the bubble.

Good luck. I guess the upside is that if you pick chemo it will have some benefit. At 22 it just seemed too tiny for me.

momand2kids

For what it is worth-

I had lumpectomy, chemo and radiation.  Oncotype of 26 or 27.  Gray Gray Gray---everything about my situation was in the gray area.  After I decided to do chemo (took  1 minute--I have 2 kids, wanted to do whatever I could) I asked both my surgeon and onc what they would advise if I was their sister. Surgeon, who is outstanding said' I would tell you that this is the current standard of care and that you should do it"  Onc said "It would be hard for me to NOT give you chemo"  None of us were happy about it.

I am not saying you should do it, but given your age, definitely ask them what they would say if you were their sister.  I was older than you, but still considered"young" in breast cancer.  You are very young--- you want to really think about what you can do to eradicate this.

For me it was a gut decision.  I did not want to do it, but I knew if I did not, I would be up every night worrying.  I am almost 5 years out and sleep soundly.  Everyone is different on this--you have to make the decision that works for you.  good luck

momand2kids

For what it is worth-

I had lumpectomy, chemo and radiation.  Oncotype of 26 or 27.  Gray Gray Gray---everything about my situation was in the gray area.  After I decided to do chemo (took  1 minute--I have 2 kids, wanted to do whatever I could) I asked both my surgeon and onc what they would advise if I was their sister. Surgeon, who is outstanding said' I would tell you that this is the current standard of care and that you should do it"  Onc said "It would be hard for me to NOT give you chemo"  None of us were happy about it.

I am not saying you should do it, but given your age, definitely ask them what they would say if you were their sister.  I was older than you, but still considered"young" in breast cancer.  You are very young--- you want to really think about what you can do to eradicate this.

For me it was a gut decision.  I did not want to do it, but I knew if I did not, I would be up every night worrying.  I am almost 5 years out and sleep soundly.  Everyone is different on this--you have to make the decision that works for you.  good luck

tmb173

Had my appointment this morning. Thanks so much for all the input! Still making up my mind. Leaning towards chemo, but the infertility is a serious issue. I was pretty sure I was finished having kids, but having the choice taken away is entirely different.

Anonymous

I'm sending over some positive decision making vibes.  

fd1

Certain chemos have much more of an effect on fertility than others.  Your doctor may be able to choose one with the lowest risk if that is a big concern for you.  Incidently, you can also do fertility preservation before starting chemo.  I did IVM and we have quite a few embryos waiting for us as a back-up.  You can also freeze eggs or part of your ovary, but these methods are less successful. 

I think for you it ends up being what your risk threshold is at.  I decided to throw everything at it and deal with any possible side effects - even 1% was important to me, but others are much more comfortable with their intuition.

Good luck!

Robin3

My oncotype was 19. I had one lymph node involvement. This put me in a gray area. My oncologist really wanted me to do chemo. I did a LOT of research. I saw there was another type of chemo called CMF. It's a LOT less harsh and a lot less side effects. It's an older regime which is coming back into play. I'm six treatments in out of 8. It's completely doable. I feel comfortable knowing I did chemo. (although some people tend to call it chemo lite. look chemo is chemo.) I had a lumpectomy then when i'm done with chemo I will do radiation. I'm comfortable with my decisions. You need to research and be comfortable with yours. Good luck with your decision. If I can be of any help please feel free to ask or pm me. :-)

Robin

cookiegal

One thing my onc told me stuck with me, he said "There will never be a study that shows chemo is more effective for ER+ than we thought it was. "

It was really wise. This was 2009, and I had a positive node and a 22. It was almost unheard of not to do chemo with those stats, now I would say 30% may not do it.

In 09 I would have done it with 25, but now if they are telling you 3% benefit, hmph!

Robin has very similar stats to me, and chose CMF and is doing well, so there you go, there is no "right" path.

nwrigs

I had a positive node and a score of 22 (ER/PR+ and grade 1).  My oncologist ordered the onco test at my request.  But he told me that no matter what the score, it was very unlikely to change his opinion about chemo for two reasons.  First, my age (34) and second the lymph node.   He still recommended chemo with a 22.  I had a 2nd and 3rd opinion on the chemo -- same recommendation.  The second doctor said that I would be hard pressed to find an oncologist who would not recommend chemo.  I did 8 rounds of ACT from September to December 2012.  And afterwards I did the standard course of radiation to my breast and nodes -- 6 weeks.  

From the day of my diagnosis until shortly before I made my decision, I was very much against chemo (that is an understatement).  But, I did it.  And I'm glad that I did it even though it was not easy.  It is a long road, and I worked very hard to stay on top of everything, but I'm starting to feel much better these days.  I'm on Tamox too.  I'm extremely active and exercise almost everyday.  I also run 15-20 miles a week.  As funny as it sounds, chemo made me stronger and more resilient.  I have no regrets.  I miss my long hair but get plently of compliments on my short haircut now.   

I also did a round of fertility preservation beforehand.  I do not have any kids.  Maybe someday.  

Good luck with your decision.  I struggled with my decision but honestly have absolutely no regrets.     

tmb173

Well I can't begin to properly thank everyone!  

Based on my age and my grade 3 tumor (which makes sense- the younger you are, typically, the more agressive the tumor) I think I am going to do the 4 rounds of TC.  That should drop me down to about a 10.5-13% recurrance and I can live with that.  I feel like I am picking the middle road but it is what I am most comfortable with.  As much as I liked my 2nd opinion MO, I think I am going back to my first doctor.  The office is close to my house, and I really liked the staff.  Those factors are the most important for me.  I may also look into extending the Tamox beyond the 5 years.

Anonymous

TMB - check out the Young Survival Coalition website.  http://www.youngsurvival.org/  Think you'll find many examples of young women who have had their eggs frozen - b4 chemotherapy.  Lovely to see the young women coming into where I had my chemotherapy, carrying the babies they've had after chemotherapy - to share their joy with their oncologists.

Anonymous

tmb173 ~ congrats on coming to a decision.  I think your choice of going with the MO office closest to your house and with a staff you like is smart.  Since you will be visiting the office many times over the next couple + years, those factors will help make the process a little easier.

Best of luck to you.

(I also missed that your tumor was grade 3 ~ that is "better" in the sense that chemo is more effective on higher grade tumors)

Gully

Hello everyone! My I had two Oncotype Dx tests done due to the fact that I have bilaterial bc. The right came back at a 5.....was so happy no chemo.....then the Left on came back two weeks later at a 19 very near the edge of low and barely into the intermediate. So it was up to me. I chose to do the t/c x4 for a few reasons. I am still considered young for bc at 45, and I work out 5 days a week and fit. I have twins at home that still need me. I had two cancers that when you add them up become 1.9 cm. (.7 and 1.2) IDC . I was so upset trying to make a decision that I lost 12 pounds. Dana Farber pushed me over the edge to the chemo side but still said it was up to me. I chose the chemo and slept well that night. Its personal, different for everyone. If it comes back I dont want to have any regrets. The test measures 21 genes that are not in the report you get with the number. It was my understanding from DF that any one of those could also cause recurrance we just dont know more about that part of the biology yet. That sealed it for me. hope this helps somewhat. 

cookiegal

gully, I think with multi focal you made the right call....

tenacitylinda

Had lymphoma at 25 - stage 4 - was on chemo for 3.5 years.  fast forward to now - BC. Stage 1. ER PR receptive positive HER negative.  Oncotype DX was 21  however, before that I had decided enough chemo for me the first time around.   Had 20 rounds of radiation and on Aromasin for 5 years but Drs leaning towards 10 years.  Drs support my decision of NO chemo.  Radiation and long term Aromasin are good.  Is anyone taking Aromasin - a lot of fatigue and muscle/joint pain achiness.  Took Arimidex for 8 months - could hardly walk or function.  Switched to Aromasin.  Some bad days, some good days.  Drs are open to switching but I am worried about switching again.  I just had bone density test.  13% bone loss in 2 years.  Was diagnosed 2 years ago this month.